These are the stories of us. These are the anecdotes of our days. This is the good bad and ugly (mostly good) of our not so unique, large (but not as large as some) family, living life to the fullest. Some of us might not have the average number of years generally allotted but we will fill each of those years with the celebration of family, friends and life

Wednesday, February 29, 2012

You are way way way too young to be so unevolved (if it is not a word it is now!) to be questioning me..in front of my children. I get that you are new to the world of people with disabilities and I will comp you a few questions such as "are you their caregiver?" and " she (indicating Malia) is your grandchild?" I understand those. I will even forgive asking about my kids' disabilities knowing that we are your ambassador to the world you and your family have been thrust into. Where I draw the line however is when you..again in front of the three with me exclaim "well they can't be your REAL CHILDREN". Strike one lady. "Yes they definitely are my real children though I did not give birth to them. I adopted". "You ADOPTED?! You must really have a big heart, blah blah blah". "But THEY"RE NOT REALLY YOUR CHILDREN!" Strike two. "Yes they are really my real children I just did not give birth to them." "You adopted! You must really have a big heart..." Strike three, not because of the last repeated comment but more because your ignorance is beginning to pick my piles.

Just as I did not stoop to the level of spanking the tar out of my five year old whose disobedience and attitude disability not withstanding would have had my head rolling down the mall as a child I did not take you by the shoulders and shake the sh@# out of you all the while yelling at you to get a friggin clue.

Unfortunately if the parent of beautiful little Rose that you raised is as dense as you that poor baby has bigger issues than the rearranged chromosomes that created her.

I reread the last post and realized there were many errors as I tried to incorporate pictures etc and with my lack of techy skills and failure to proof read it was painful to follow. Hopefully all corrections are made.

Monday, February 27, 2012

Months and months ago I nominated Journey to be a medal bearer in the 25th Anniversary Rick Hansen Relay. Rick Hansen is a paraplegic who 25 years ago wheeled himself around the world visiting about thirty four countries raising awareness about people with disabilities, accessibility issues etc. It was the Man in Motion Tour. He has continued on with the Rick Hansen Foundation raising money for research for spinal cord injuries and other issues preventing the disabled from participating fully in their environments and society as a whole. With the anniversary run he is repeating the Canadian tour replicating the stops and even timing of the stops so that they were in the same places at the same time but a quarter of a century later. Instead of Rick doing the relay he wanted individual Canadians taking part...Difference Makers he called them. Each participant would be given two hundred and fifty meters to run, walk, wheel, dance...whatever they chose. Medal bearers were nominated by filling out an online form that illustrated their struggles, triumphs and contributions to their community. There would be seven thousand chosen. Well....Journey was chosen. Not only was she given the chance to participate in what could be a once in a lifetime opportunity she had also been offered the prestigious position of being the end of day medal bearer. This meant she would do her two hundred and fifty meters and at the end of her run Rick Hansen would be there to greet her and together they would bring the medal into the end of day ceremonies where local dignitaries would speak and Rick Hansen himself would offer his words of inspiration and gratitude.

The day started with the meeting of other medal bearers. They each told a little about themselves, how they came to be participating in the relay and what Rick Hansen had meant to them in their own lives. The room however was filled with those who were not born or just barely when the original Tour occurred. Lawd that's the story of my life! Everyone is younger!

There were folks with disabilities who were leaders in their schools and active participants in athletics and who had established their own support organizations. There were single parents who were running to be an example to their children showing that one person can make a difference. There was a former investment banker turned aspiring speed skating Olympian. There was an alpine skier from the 2002 Olympics. There was a politician and can I just add that those politicians...they never quit schmoozing! There was a geologist in his sixties who as it turns out is a VERY prominent business man who twenty five years ago together with his friends came up with the little idea that grew and grew until it earned tens of thousands of dollars for the cause with NO overhead. He was thrilled to be a part of the relay this time around too. There were others whose stories I can't quite remember but believe they were chosen by their corporations due to their volunteer activities but what was most outstanding to me was how resilient the human spirit is and even when crap happens as it did to many of them they spent less time moping about their circumstances and looked more at how do they improve things, not just for themselves but others as well.

Once all the introductions were done and folks were comfortable a warm up dance was done. Very fun to watch and from the looks on their faces fun to do as well. It was a Katie Perry song. I have a terrible memory but I think it was Fireworks.

Warm up complete we were loaded onto a shuttle where we would travel to each medal bearer's start point. Music blared and cheers rang out as we applauded each person's departure with calls to them to savour the moment. There was such a feeling of camaraderie and support with all of the participants feeling honoured and that they were a part of something way bigger than themselves.

Finally it was Journey's turn to get off the bus. With her being left there was just me, the driver and the escort to cheer but she was greeted immediately by two handsome fellows who praised her and gave her the directions she would need for the medal transfer. The convoy was quickly coming towards Journey and I could feel her nervousness and excitement. She has terrific coping skills and handled it all brilliantly. All of the medal bearers before her walked along side her with cameras clicking and video being recorded. I think this might have been the first time she didn't feel her usual pain and stiffness in her joints and was not worried her knee would dislocate.

Friday, February 24, 2012

Surgery to correct Ailish's huge curvature was scheduled for Wednesday March 16, 2011. There were physician orders to be followed at home the day before. There were special washes that I needed to use on her back Tuesday morning and evening and then the day of surgery. I was diligent. I did exactly as told.

Ailish attended school on the Tuesday. She was given a big teddy bear that wore a school shirt with all the names of the kids and staff in her class and words of encouragement. Everyone was routing for her. In the evening she was to have a full shower. There were highlights of that Tuesday evening that stand out in my mind. I remember exactly where I had her in her chair as I did her waist length hair after her shower. Because her hair was so long, thick and curly it was hard to put a brush through it and then style it so it didn't matt. This sometimes caused Ailish to cry as she did that night. I remember the words I said to her as if it were yesterday. I said "aww it's ok Ailish. It's the last time you will have to have your hair done". I quickly realized what I said and added "I mean for a few days". I was horrified that the words had come out of my mouth the way they did.

I had been paranoid for the two years leading up to the surgery that Ailish was not going to survive such a big operation. I had no basis for my fear but it was ever present. Ailish was very healthy outside of her obvious profound disabilities but I always worried about tempting fate. I worried that her not ever having had to "fight for her life" so to speak like so many kids who share the same or similar diagnoses that she had no stress response and that incurring such an assault to her body would throw her into a situation she was ill equipped to deal with.

The rest of Tuesday evening was uneventful for Ailish. In knowing I was having to spend seven to ten days in hospital (though I secretly hoped for the five the surgeon hinted some kids can go home by) there was a lot of organization that had to happen not only for myself and Ailish but especially for the other kids. I had a wonderful person moving in and taking over who knows the children well and was more than capable. That being said the house had to be set up for her success. This can be a big job.

Ailish settled to bed easily. I had dressed her in the outfit she would be wearing to the hospital as she would be fasting and so diaper leaks would be unlikely. We had to leave by six a.m. to arrive by six thirty and I needed to ensure all the kids backpacks were ready for the day, labels in place etc and that I was semi presentable. If Ailish was ready to go with exception of outerwear then I would be that much further ahead. As far as Ailish was concerned this was an evening no different than others.

Though the up and coming patient was sound asleep unaware of what was about to occur the next morning her youngest brother was wide awake feverish, nonstop coughing with copious secretions. He too has a condition labelled as "devastating", "unsurvivable" etc etc. It is alobar holprosencephaly which though different than hydranencephaly also leaves the child with very little brain matter, usually facial deformities and a cornucopia of health issues. Our little guy though experiencing some of the aforementioned is quite healthy, rarely picking up any bug going around. If he gets ill it is more likely a urinary tract infection or aspiration. Both can look the same for my boy. I wasn't sure what was going on but I couldn't believe the timing. Finally after a few hours of breathing treatments, much suctioning etc we both slept though mine was not restful. I was going to have a full day of waiting and worrying and I wanted to get a head start in my sleep.